Wednesday, March 23, 2016

A Spring Storm

As the warm rays of sun cast a gentle radiating warmth upon my cheeks I can’t help but think to myself, “we made it.”  I can feel the sting of tears at the corners of my eyes and I have to tip my head towards the sun to keep the tears from spilling down onto my cheeks. We had made it through winter. Spring had arrived early and I was wrapped within its promising warmth. Spring meant new life, a renewed hope, and an inner peace budding deep from within. Again, resounding within every part of my being were the words, “we made it.” And I believed and celebrated it whole-heartedly.

But I was reminded how quickly the seasons of CF can change. How quickly a spring snowstorm can suffocate spring’s hope – reminding the innocent new life of its unforgiving power. Today, winter’s fury is forbidding to relinquish its control to the peace of spring. Yesterday was a beautiful 60 degree spring day here in South Dakota. Today, we await an unforgiving wintery snowstorm.

Winter’s Song
Upon returning home Monday morning from a most beautiful extended trip to the beach, I had a full afternoon and night of teaching scheduled. Early that afternoon, I went into my studio to warm up and get myself organized for the voice lessons that lie ahead. But something felt different and off. I thought maybe it was because I literally hadn’t sung a note in ten days – the most time I’d taken away from singing in over a year. As I warmed up and sang through a few things, I noticed how quickly I’d run out of air and how difficult it was for me to finish phrases that just ten days ago were simple. Within me I could feel winter’s gentle, yet unforgiving snowfall beginning to drench my being.  As I taught and sang with my students the rest of the day and night, I noticed how starved of breath I felt and how my lungs burned to take in more air than they were allowed.

Tuesday morning between the normal adventures and opportunities that fill my life, I made a visit to my clinic to do a quick lung function test (PFT) - just wanting to check-in and see if there was any cause for concern. I was reminded of the unrelenting presence of winter amidst the beauty of spring. In just two weeks since my last PFT my lung function had dropped 10% to a FEV1 of 40%. So, Penny was called upon. Aggressively, both IV and oral antibiotics were started. The words “we made it” wept silently from the deepest parts of my soul. Disappointment threatened to replace spring’s eternal hope. Disappointment in myself and a disappointment and sadness I feared to see reflected in the faces of those I love. But within that disappointment is still something to be grateful for – I made it five months without IV antibiotics. That’s the longest I’ve gone consecutively in over 3 years. That is truly something to celebrate.

The Hope of Spring
This winter storm’s snow will melt into the earth, disappearing beneath the spring’s powerful sun and renewing warmth. This “storm of CF” will melt away. Today’s snow will give life to the most beautiful of springs. The seasons of CF will always change and its storms will rage but the hope of spring will dwell eternally within me, always waiting to be enlivened by spring’s warmth.

Amidst the pains of CF is the deepest gratitude and love for my CF Team. I am so thankful for each of them - their genuine care, guidance, strength, and reminding me that I’m never alone in this journey.  I'm grateful for my deep love of singing and the gift it gives me to combat CF and know when something is off. I'm grateful for each of you and the beauty of spring you each reflect into my life. Love to you all.

Think spring. 


  1. Roselyn (Jacobson) SchillerstromMarch 31, 2016 at 9:35 PM

    Hi, Ashley! I just finished reading the insightful, well-written, heart-warming article in the SHE magazine about you. I couldn't help but think of the Wadsworth poem I love, "The Arrow and the Song" that your brother, Mark, and you would have read in Junior English. The poem and its meaning seems to so aptly fit you...maybe that is where you got the inspiration for your symbol? If not, look at how your life and experiences fit unbelievably well with those who have gone before you/us...

    I shot an arrow into the air,
    It fell to earth, I knew not where;
    For, so swiftly it flew, the sight
    Could not follow it in its flight.

    I breathed a song into the air,
    It fell to earth, I knew not where;
    For who has sight so keen and strong,
    That it can follow the flight of song?

    Long, long afterward, in an oak
    I found the arrow, still unbroken;
    And the song, from beginning to end,
    I found again in the heart of a friend.
    Henry Wadsworth Longfellow

    1. Mrs. S -
      What an incredible surprise to get a note from you, and what a meaningful one it is. I actually recently was just thinking about your smile and your infectious laughter. Thank you for the kind words about the article. It all seems a bit surreal.

      I actually did not recall the Wadsworth poem until I read your note and its familiar tone flooded my memory. It's eerie how perfect it seems to reflect my life and how it has unknowingly been ever-present. You've shared such a gift with me. Thank you from the bottom of my heart.

      Sending all my very best to you,

  2. You are welcome...I follow your journey and wish the best for you, Mark, and all those who are close to you! :)rs

  3. You are welcome...I follow your journey and wish the best for you, Mark, and all those who are close to you! :)rs